The Mukka Family. Here’s our story…our grandma June had HD she passed away when we were really little, many years ago. One day as we pull up the driveway there was an ambulance and some police cars near the shop.  My mom told us that uncle Frankie died.  He shot himself; he had HD and was not a very happy man. Then Karli came along and started having a hard time doing a lot of normal kid things.  It took two years of

going to drs before we even knew what JHD was. When we found out that Karli could have this, it meant daddy could be sick to. Later they both tested positive. Karli became the poster child of HD awareness. Her add was in all kinds of magazines such as Time, News week, this old house and 30 others! She was famous to she told Billy Aaron Brown big Hollywood actor. A few years later Jacey became symptomatic and decided to test. She to tested positive for JHD. Then 2 years later I tested and next thing you know the drs were saying she is positive to. Jacey and I attended a national convention for HD and found out

that research was geared mainly for adults with HD,and because reasons we didnt understand,it excluded most of the Juvenile popullation of this disease.  That inspired us to make a change and get people involved to help raise money so that drs and researchers could start a fund to help find help and understanding  for the kids. After all children are the future generation. Unfortunately Karli and my dad Karl just passed away. Karli fought through many seizures, nurses, hospital visits and kicked many boys with stinky finger.  She passed away on Feb 16, 2010.  My dad Karl passed away on April 29, 2010 peacefully in his bed at the nursing home. They are now in heaven together, looking down on all their friends and family. Doing what they do best, playing tricks on us.

Through all the bad there has been some good make-a-wish granted us all wishes.  We have the best caregivers, my mom Jane who was always there by Karli’s side day or night (she will continue to do the same with Jacey and Myself) and our sister Karisa who is not at risk but of course would do anything possible to help us when we need it.  They ARE the strongest of us all, because they have to survive it all. I’m never going to forget the day my mom told us that we weren’t an unlucky family; we just won the genetic lottery. I think what helps us get through it all is we try to end each day in a smile, make good out weigh the bad, and constantly remind one another that we are here for each other.

Mom’s Channel

15 Replies to “JHD Stories”

  1. Erica, you and your family are very strong and have been through so much. I am so happy that i have the oppertunity to be a part of your family. to me you are my best friend, maybe like a sister. I know we dont spend as much time together as we used to and have the weekends to have fun, but we will soon.!! Just keep you head held high and your hope for life strong. you know that i am always here for you, I LOVE YOU ERICA!!!!! im coming over as soon as i can be off bed rest

  2. I have not met the Mukka family face to face (yet– June is coming) but speak to Jacey often, and think they are such an inspiration.
    It was so sad to read about your extended family (grandma, uncle).
    This site will be so great for this cause.
    Love You J.M

  3. Your family are turly a inspration. I can not tell you how blessed this world is becasue you choose th help and speak out. I can not imgain what you mom and sister are going thur let alone what you and your sister are. you are so right about ending each day with a smile.
    I am going ot try to post kate’s (my daughters) story here too. thanks for sharing
    Thank you

  4. Jan, I am in awe of everything you do for Keely. I know you do it selflessly and without a second thought, because you love her, but I still think it’s amazing that you care for her 24/7 without a break, and manage to hold it all together. You are both always in my prayers – keep up the good fight! Love you and miss you!

    – Alison

  5. I am sad to inform you that my beloved Keely Kennedy-Todd lost her battle with JHD on Christmas Day, and is now our newest JHD angel. She must have the most beautiful sparkly wings of red, green, silver, gold, pink and purple!

  6. I can relate to all the HD families who have lost a young family member,
    we had a child with Taysachs die after a whole year on a ventilator,he would;ve
    been my second cousin.
    Taysachs is a fatal brain disorder caused by toxic levels of fats that
    damage neurons in infants born to parents of Ashkanasik Jewish extraction,
    however in recent years French Canadians,cajun and the Irish commmunities
    have had a high prevalance of Taysachs affected infants born due to random
    pedigrees overlapping other than Eastern Jewish families.
    T aysachs unlike HD, is autosomal recesssive which means both parents must have one mutated copy of the Taysachs gene.
    Parents of Taysachs affected infants are not themselve’s affected by the disease Iam
    refferring to here.
    I have alll the HD affecced families in my heart”
    Sincerely Yours’

  7. Very nice post. I just stumbled upon your blog and wished to mention that I have truly enjoyed browsing your blog posts. In any case I will be subscribing in your rss feed and I hope you write once more very soon!

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  9. I have watched my step father, his sister, and cousin be affected my huntingtons.out of the 3 above our cousin is still with us. My little sister is 14. She has recently found that she is symptomatic and has the gene of JHD. We are trying to find the funds to make it to vegas for our first convention to show her she is not alone and there is so much support in the world aside from us. Your story is very touching, although I am not at risk and I will never fully understand I will always do my best to be there for her and anyone i meet. Our love and prayers go out to you and your family ………….Amber

  10. My heart goes out to your family. My son Gabriel is 6 yrs old and was just diagnosed. He is the youngest child in the maritimes (Canada) to have been diagnosed. His CAG count was 90 which to my understanding is quite high. He has been displaying symptoms since the age of 2.5. Im scared for my baby, but I know God has a plan for everyone, and having found this site (Jacey recommended it) I believe I have a new found support.

    Thank you…Tristin

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